National Children’s Study upgrading data gathering, analysis

The National Children’s Study is changing its approach to informatics—the science of classifying, cataloging, storing, analyzing, and retrieving information, study officials announced today.

The new approach, termed facilitated decentralization, seeks to test a variety of different yet compatible information systems to identify those that will best meet the needs of the study. Study officials invite interested researchers in the federal government and in research institutions to collaborate on new informatics components to be integrated into the study’s main informatics system.

The National Children’s Study is a multi-site research study examining the effects of environment and genetics on the growth, development and health of children across the United States, from pre-conception to age 21. Because of its size, length, and complexity, the study will be conducted as two separate but related studies: a vanguard, or pilot study and a main study. The vanguard study seeks to evaluate the ease, acceptability, and costs involved in the methods needed to conduct the main study.

Results from the vanguard study will be used to inform the design of the main study, which is planned to begin in mid-2012. The new components for the National Children’s Study informatics systems will be tested in the vanguard study.

The National Children’s Study is led by the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health, in collaboration with a consortium that includes the NIH’s National Institute of Environmental Health Sciences, the Centers for Disease Control and Prevention, and the Environmental Protection Agency.

“The idea is to identify and develop systems that not only meet the study’s current needs, but can also be adapted and upgraded easily to meet the changing needs of the study as it proceeds through its 21 year span,” said Capt. Steven Hirschfeld, M.D., United States Public Health Service, the acting director of the National Children’s Study and director of clinical research.

Dr. Hirschfeld explained that the facilitated decentralization approach for the study seeks to move away from proprietary informational systems to publicly available, non-proprietary systems. The National Children’s Study will establish uniform standards for the new informational systems components to be studied. In addition to being non proprietary, prospective components must open architecture based—meaning that it can be easily upgraded by researchers wishing to collaborate to expand the system’s capacity.

Dr. Hirschfeld added that the new approach is the first time that different systems can be evaluated concurrently. In addition, the approach is intended to facilitate efforts to classify the concepts and terminology needed to carry out the study. Many conditions and disorders that National Children’s Study scientists will study are unique to childhood and are not uniformly found in the current classification systems that researchers use for their analysis of adult studies. For example, different terminology systems vary on how they have classified a structural birth defect affecting the roof of the mouth. The condition is generally referred to as cleft palate, but different terminologies in use may or may not include a cleft lip within the term or the concept. The NCS is working to coordinate the various terminology systems that apply to early childhood, relate them to terms and concepts across the life course, and ensure that a robust informatics infrastructure supports a uniform terminology.

About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the Institute’s Web site at http://www.nichd.nih.gov/.

About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

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